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Lower health-related quality of life observed in patients with Addison’s disease, Cushing’s syndromePosted by Mary O
Patients with hypothalamic-pituitary-adrenal axis dysregulations report health-related quality of life that is far lower than that of the general population, according to findings of a prospective study.
Our program will include:
Senior Administrator Nichole Klute Rushton••• of the Addison’s Disease Support Group (https://www.facebook.com/groups/addisons.support/) on Facebook, will speak in detail about the unfortunate adrenal insufficient patients who have tragically passed, reminding us that the danger of loss of life is a reality for every person with adrenal insufficiency who doesn’t receive the vital hormones they need
Administrator Debby Hunter ••• of the Living With Addison's Disease Support on Facebook (https://www.facebook.com/groups/LivingWithAddisonsDisease/) who will give us tips on how we can approach our local emergency facilities and hospitals with information about adrenal insufficiency and its care in a crisis situation. She will also share her own personal experience with going through an adrenal crisis.
Deputy Sheriff Chris Spires••• who will speak on life as the husband of an Addison’s disease patient, and share with us how the law enforcement community views adrenal insufficient patients
Melanie Wong ••• National Adrenal Disease Foundation (http://www.NADF.us) Executive Director, who will speak about the recent tragic losses, and the vital importance of reminding the medical community about adrenal insufficiency, as well as NADF’s latest project to get NADF Adrenal Crisis Care posters displayed in every emergency room facility in the United States.
- Malhotra N et al. Abstract #102. Presented at: American Association of Clinical Endocrinologists (AACE) 24th Annual Scientific & Clinical Congress; May 13-17, 2015; Nashville, Tenn.
"An array of neuropsychiatric symptoms is associated with AD. Addison is quoted as saying in 1855 that AD patients might present with “attacks of giddiness, anxiety in the face, and delirium.”1 Anglin et al1 also noted four case series published in the 1940s and 1950s that found the prevalence of neuropsychiatric symptoms in AD to be between 64 and 84 percent. Iwata et al6 reported that in some cases, the neuropsychiatric symptoms were the initial and sole presentation of AD, even though such symptoms are more common in the late course of the disease; this might lead to a patient initially being misdiagnosed, as it did in our case, and in turn, incorrectly treated. Neuropsychiatric symptoms of AD include, but are not limited to, depression, lack of energy, and sleep disturbances. During an Addisonian crisis, agitation, delirium, and, in some cases, visual and auditory hallucinations are reported.1 According to Smart,7 neuropsychiatric symptoms might also be the first presentation of an Addisonian crisis, especially in a patient who was previously symptom free while under therapy."It is not clear exactly why these neuropsychiatric symptoms appear. It is possible that electrolytic and metabolic disturbances could produce these symptoms, and hyponatremia, which is its central expression, can result in brain damage. Other researchers believe that the neuropsychiatric symptoms are the effects of glucocorticoid abnormalities on the brain. Some researchers believe that unusually low amounts of the substance could produce hallucinations. In one report, Addison's disease presented as a psychotic break:
"A Caucasian 63-year-old man presented a five-month history of progressive depressive symptoms with sadness, anhedonia, asthenia, hyporexia, insomnia, limb weakness, and psychotic symptoms. He was a former heavy smoker and had been diagnosed with chronic occupational lung disease (silicosis). After a specialized psychiatric consultation, the patient started taking fluoxetine, risperidone, and nitrazepam. After a short period of time, the patient withdrew his medication by his own because of worsening of the limb weakness. The patient became severely paranoid with persecutory beliefs, delusions, an infantile speech, progressive social isolation, fear of leaving his home, periods of mental confusion and disorientation, and sporadic nausea and vomits. A few days before hospital admission, the patient almost stopped fluid intake and evolved with syncope."From http://www.examiner.com/article/addison-s-disease-may-cause-psychosis-say-researchers
- In what ways have Cushing's made you a better person?
- What have you learned about the medical community since you have become sick?
- If you had one chance to speak to an endocrinologist association meeting, what would you tell them about Cushing's patients?
- What would you tell the friends and family of another Cushing's patient in order to garner more emotional support for your friend? challenge with Cushing's? How have you overcome challenges? Stuff like that.
- I have Cushing's Disease....(personal synopsis)
- How I found out I have Cushing's
- What is Cushing's Disease/Syndrome? (Personal variation, i.e. adrenal or pituitary or ectopic, etc.)
- My challenges with Cushing's
- Overcoming challenges with Cushing's (could include any challenges)
- If I could speak to an endocrinologist organization, I would tell them....
- What would I tell others trying to be diagnosed?
- What would I tell families of those who are sick with Cushing's?
- Treatments I've gone through to try to be cured/treatments I may have to go through to be cured.
- What will happen if I'm not cured?
- I write about my health because…
- 10 Things I Couldn’t Live Without.
- My Dream Day.
- What I learned the hard way
- Miracle Cure. (Write a news-style article on a miracle cure. What’s the cure? How do you get the cure? Be sure to include a disclaimer)
- Health Madlib Poem. Go to : http://languageisavirus.com/cgi-bin/madlibs.pl#.VPGZQlPF9A8 and fill in the parts of speech and the site will generate a poem for you.
- The Things We Forget. Visit http://thingsweforget.blogspot.com/ and make your own version of a short memo reminder. Where would you post it?
- Give yourself, your condition, or your health focus a mascot. Is it a real person? Fictional? Mythical being? Describe them. Bonus points if you provide a visual!
- 5 Challenges & 5 Small Victories.
- The First Time I…
- Make a word cloud or tree with a list of words that come to mind when you think about your blog, health, or interests. Use a thesaurus to make it branch more.
- How much money have you spent on Cushing's, or, How did Cushing's impact your life financially?
- Why do you think Cushing's may not be as rare as doctors believe?
- What is your theory about what causes Cushing's?
- How has Cushing's altered the trajectory of your life? What would you have done? Who would you have been
- What three things has Cushing's stolen from you? What do you miss the most? What can you do in your Cushing's life to still achieve any of those goals?
- What new goals did Cushing's bring to you?
- How do you cope?
- What do you do to improve your quality of life as you fight Cushing's?
- Your thoughts...?
The New Jersey Department of Health passed a waiver in October of last year that allows ambulances to carry Solu- Cortef, for the purposes of treating an adrenal crisis. As a result, New Jersey ambulances can be better prepared to treat adrenal insufficiency.
This news was brought to NADF by Karen Fountain of the CARES Foundation, who has been helping push state health directors to accept protocols to help treat adrenal insufficient patients during an emergency.
Adrenal insufficient people in New Jersey should contact their local EMS to make them aware of the waiver, and encourage them to carry Solu-Cortef in their ambulances.
The hope is that other states, and eventually the entire country and beyond, will start having their ambulances carry the needed medication to treat adrenal crisis.
- The study objectives were to characterize pharmacokinetics and examine disease control following 6 months dose titration.
- Serial profiling was obtained at baseline (conventional glucocorticoid) and every 2 months.
- Twice-daily Chronocort® was initiated: 20 mg at 2300 h, 10 mg at 0700 h.
- Dose titration was based on clinical status and optimal hormonal ranges (17OHP 300-1200 ng/dL, normal androstenedione (males: 40-150, females: 30-200 ng/dL), with androstenedione prioritized.
- Chronocort® cortisol pharmacokinetic profile was the primary endpoint.
- Secondary endpoints included biomarkers of disease control.
- A total of 16 adults (8 females; age 29 ±13 years) with classic CAH (12 salt-wasting, 4 simple virilizing) participated.
- Conventional therapy varied (5 dexamethasone, 7 prednisone, 4 hydrocortisone).
- Chronocort® cortisol pharmacokinetic profile approximated physiological cortisol secretion.
- Ten patients required Chronocort® dose adjustments (decrease in 8, increase in 2; mean hydrocortisone equivalent dose conventional vs 6 months: 16.1 ± 6.4 vs 14.7 ± 6.4 mg/m2).
- Serial androstenedione levels were in the normal range in 8 (50%) of patients on conventional therapy compared with 12 (75%) on Chronocort® at 6 months.
- The majority of patients on Chronocort® achieved 17O HP levels within the normal range, rather than within the mildly elevated range currently used for management.
- At 6 months, Chronocort® resulted in lower 24-hr (P=0.02), morning (0700-1500; P=0.008), and afternoon (1500-2300; P=0.03) area-under-the-curve androstenedione compared with conventional therapy.
- No serious adverse events occurred.
- Common adverse events were headache, fatigue, early awakening, and anemia.
- Three patients had unexpected carpal tunnel syndrome, which resolved with wrist splints.